Sunday, August 25, 2013

I apologize for my posts being so spaced out. I know from the multiple emails I receive
that many supporters continue to pray for our family and I know all too well
how updates are comforting to read, especially when there’s good news to
report.

The reason for my lack of postings-- I’m superstitious and
so putting things in writing makes me nervous and I’ll leave it at that!

We received wonderful reviews at Wrenn’s last visit in St.
Louis on April 1st. This
blessing made her 3rd birthday (April 14th) even more
special. I really wanted to do something
amazing for my little girl and with the help of my wonderful friend Trina,
Wrenn, Tanner and cousin Tyson enjoyed pony rides on an adorable six-year-old
pony named Buttercup in our backyard.
Wrenn wanted an Elmo theme and requested tons of balloons. Our immediate family was present and we
enjoyed watching our little princess celebrate her big day.

In early March, Wrenn was again having some GI issues and so the St.
Louis doctors ordered several bowel tests. We finally figured out her issue, and
just in time, because she had a few more prolapsed rectums and I thought--I cannot go through this again!

Apparently, Wrenn can’t digest high fructose corn syrup and
is also lactose intolerant. Once I made
these dietary changes (which stunk, because the kid loves food in general and
tries everything), she was a different child--no more gas pain, bloating,
excessive bowl movements on a daily basis and overall a much happier kid. I was surprised that certain fruits and
veggies (such as tomatoes, cucumbers, grapes and watermelon) were bad for
her--I always figured healthy foods were good for everybody. After three long years the mystery has been solved
and thank goodness our GI team in St. Louis figured it out!

Wrenn’s most exciting news this summer is that she’s
starting to take her medications (they taste horrible) by mouth. Now that she’s eating well on her own
(drinking is questionable--it varies weekly), we are hoping she can get her G
Button removed within the next six months.
If given the option I’ll probably have it removed after flu season--just
in case.

Wrenn has speech therapy but for only 30 minutes a week now,
which is so short I’m not even sure it’s productive. If nothing else, I find out what we need to
work on and I’m the therapist. (As long
as I’m not pushing back in rectums, I can handle this easy task). I’ve introduced flash cards to Wrenn and we
do them twice a day. Wrenn has typical
problems that most preemies have, which is tightness in the lips and cheeks
from not learning how to suck at the appropriate time. She often repeats only part of a word--cutting
off the beginning in most cases. Her communication has always been outstanding
and so we’ve never had a difficult time understanding her desires. I know with
time and practice she’ll be getting A’s. J

This past April Wrenn participated in a gymnastics class
with ten other kids around her age, including Tanner. She loved it! It was her first organized sport and she was
the most energetic and eager one in class--always up for a new task, doing the best
that she could and even through her mask we could all see her eyes light up
with excitement and joy. I had tears in
my eyes watching. Although, as I finally witness a taste of normalcy something
happened to bring me back to reality and I’m reminded to be cautious with where
we put ourselves daily. We were in the very
last gymnastics class this past month and a mom at the water fountain mentioned
that her kids were cranky from getting shots that morning. I of course asked what shots they had received
and as soon as she told me about the MMR (Mumps, Measles & Rubella), I
grabbed the kids, their shoes, my purse and we ran out of there as if the
building were on fire. Wrenn cannot be
around a person who has just been given a live virus (this would include the
flu mist) or she could easily catch the virus, which would be VERY bad. I cried
the entire way home in fear that Wrenn would get sick, even though she had a
mask on and had had minimal contact with the two kids. Prior to starting gymnastics I had told all
the parents about our tender situation but shots weren’t on my mind and so in
many ways I felt as if I had failed her--by putting her life in danger. Luckily she was fine. No harm was done--this time. What made me very sad was that it was the
last day of class and they were to receive their gold medals with a small
ceremony as if they were at the Olympics, which I was so looking forward to seeing
and of course snapping photos of both kids. For a split second I thought about asking
the owner if we could go back and recreate the moment but it wouldn’t be the
same. Instead we’ll remember how we were
handed the medals as we ran from the building--my last memory of the event was
sheer fear.

Through my conversations with others I’m realizing more and
more that most people like to stick to structure and books with strict
timelines. With Wrenn’s immune
suppression and Tanner’s lack of social exposure we have decided for this first
year to home school Tanner for Kindergarten.
We’ll re-evaluate the situation in a year and see where our comfort
level is during the summer. At this
moment he’d be attending a school with thirty other kids and according to our
pediatrician, on average, five year olds are sick between 10 and 12 times
within that first year of attendance.
First grade seems to be almost as bad for illnesses but things improve
in second grade, which is where we feel we might begin public school for
Tanner. We feel by then he’ll understand
the germ aspect and importance of following the rules for our family’s
situation. As always the plan is--there is no plan. We make decisions based on the moment and
believe in our choices without regret.

It’s been interesting actually, as soon as someone hears we
plan on homeschooling they immediately freak out. What if
he’s not up to speed?He has to attend school at some point!! You’ll have to find a group to join so he
can have socialization!! The list goes on and on. It’s overwhelming to think about how I would
possibly control every single aspect of my son’s education and then while we’re
talking about it--why don’t we decide what college he’s going to attend
thirteen years from now. GEESH! These
worries tell me that people still don’t grasp our situation or our decisions
and how we make them. We feel we have a
very good understanding about what’s really important in life. The majority of kids who don’t speak until
they’re three do learn to speak and
then don’t stop talking. Some kids speak
at two and then regress because they’ve learned something else really cool. All
facts from some of the specialists I’ve worked with over the last 5.5 years. I’ve discovered that kids learn at different levels and within their own time period and you can’t rush it or make it happen
simply because it’s what’s in a book that says what should happen. No matter what, things always work out the
way they are supposed to and freaking out about everything that may or may not
happen doesn’t really get the job done.
If Tanner needs a tutor, he’ll get one.
We plan to keep him in social activities year round and so far he’s
turned out to be a very sweet boy and a loving big brother who often says out
of nowhere, “I love you Wrenn.” Either
way, Tanner will be fine--bottom line for this mommy--I pick my battles and
worrying about school isn’t one of them.
I’m very capable of teaching my kid Kindergarten and I know Wrenn’s
going to be right there beside him learning everything she can.

Believe me; deciding to home school hasn’t been so black and
white for us. I took baby steps this last year and put Tanner in karate from
September to September, which took place two to three hours a week. I was so proud of myself for sticking it out
during flu season considering it was a very BAD one but I know how important it
is for him to get that type of interaction with kids his own age. He also attended
gymnastics a few months prior to Wrenn joining his class. In some ways I feel school would be so great
for him and then when I have something like the live virus shot happen I think
how bad I freaked out and worry I’ll be losing so much sleep and would be stressed
all the time, which could seriously throw me over the cliff. If Tanner were
already in school it would be different but the fact that he’s never attended
means he has no idea what he’s missing.
In our case he’s missing out on a ton of germs and I’d really like for
Wrenn to have two more years under her belt so she can continue to strengthen
her immune system. According to the St.
Louis transplant team 50% of those transplanted make it to five and 20% make it
to ten--getting to that five year mark is huge and our goal although, I’m hoping
to steal several decades with God’s support.

Germs are everywhere and we do a pretty good job at staying
healthy, however, we’re not perfect. There are risks when we drive to St. Louis
every six months and this past April we had the shock of our lives--Three days
after we returned to Virginia, Wrenn was diagnosed with strep throat. I was suspicious that Tanner had something
going on and when we took them both to the pediatrician (only 3 days after
being back from St. Louis where she had a clean bill of health), Wrenn’s
culture was positive for strep. Tanner's was negative and the rest of us had negative cultures as well.
I guess it’s hard to be in a hospital for two days and not catch
something. Staying in three hotels
within four days doesn’t help either. I
even wipe down every counter, drawer, faucet, and doorknob but sometimes it’s
not fast enough for my little speed demon.
We’re going to figure out a more strategic way to keep her healthy on
this next trip (scheduled for mid-September).

Strep was the first infection Wrenn has had (knock on wood)
and I (being a superstitious person) worried that things would come in threes,
which is why I didn’t update my blog at that point. I had such great intentions for writing and
had it all in my head but couldn’t bring myself to put it down on paper. By the time I did decide to write we were
again dealing with another illness.

In early July Jason
was not feeling very well and then Tanner had congestion and a wet cough. I
took Tanner to the pediatrician and the doctor said the virus had to run its
course but he went ahead and put Wrenn on an antibiotic to protect her lungs from
a possible secondary infection. A week later both kids sounded horrible--coughed all night,
Tanner begged for medication (a rare thing) and then Wrenn woke up one morning and
seemed lethargic, which wasn’t like her at all.
I also noticed a strange rash all over her body. This alarmed me and so we again went back to
the pediatrician for more swabs and waited while the doctor had a conference
with the transplant team on what to do.
Tanner’s lungs were a mess (bronchitis) and the doctor said that at the
moment Wrenn’s were clear but would soon head in that direction. The team decided on a Z-pack (antibiotic) for
five days and within 24 hours both kids had finally stopped coughing and were
on their way to recovery. This was the
first time Wrenn had developed anything close to a cold and I was on pins and
needles with every cough and sniffle. I
checked her oxygen saturations every couple of hours, checked for fevers, and what
was most on my mind was thinking that there was no way I could put these kids
in school and do this ten times a year--maybe some families could handle it but
I would be a mess 24/7!!! July was the month I decided I had to for sure home
school Tanner. This summer bug was very hard
and stressful and we were lucky that Wrenn took that nasty sickness so
well. The pulmonary doctor in Richmond
said that she was extremely lucky because many of his patients in her situation
get mucus in their lungs that result in a need for oxygen, and many end up
hospitalized. I feel we dodged two
bullets this summer and I don’t want there to be a third one. Ultimately the
way the transplant team explained sickness to us is that some kids gets sick
and do very well and life goes on but for others it is too hard on their bodies
and the result is tragic. I don’t want
to test drive that path and so we continue to be smart in where we put
ourselves and how we handle social situations by educating our friends (new and
current) and staying in a comfort zone.

Heading to St. Louis this September I will be very cautious
and I plan to keep Wrenn pretty isolated on our travels but will remind myself that I did everything in my power this spring/summer and yet she still ended up sick twice. It’s good for her to be exposed to bad germs once
in a while so her body can fight them and she can continue to build a good
immune system. The transplant team will
have her IGG levels checked this September, which has to do with how her body
builds up her own antibodies--the results tell us if she’s got a strong or weak
immune system.

With our upcoming visit to St. Louis, Wrenn will be doing Big
Girl Pulmonary Function Tests where she blows into a tube to show off her lung
capacity. In order for her to prepare I
have her blow a cotton ball across the table several times a week and then blow
noise makers and she holds them out for a count of five. For Wrenn it’s all very fun and exciting as
if it’s a game. She loves learning new
things and so it’s not really work.
Wrenn’s an overachiever, of course.

Wrenn as I have said before is a firecracker, a sweetheart, is
independent, stubborn, but full of life, love and a good prankster. She loves being outside and has been able to
spend a lot of time playing with our neighbors this summer--blowing and chasing
bubbles, riding her scooter, bike, drawing on the sidewalk with chalk, tossing
water balloons at other kids and giggling to the point where mommy loves
hearing her belly laugh. The fact that
she’s doing all of this next to her brother is the best gift ever.

With home schooling I feel fortunate that Tanner and Wrenn
will continue to bond and also have the next year to play together and make
more memories. When Tanner is at a movie
or karate, Wrenn really misses her best friend and asks when he’s coming back.
Watching them play and scheme together is amazing. Hearing the two carry on a conversation in
the backseat of the car is hilarious. I
never realized how great this part of having kids would be but it makes my day
as we run errands or head to doctor appointments. I’ve literally been there for every single
day and that’s a true gift I never want to end!

Our summer days were filled with such love from our nanny
Chelsea. She has brought so much to our
family and over the last two years she has seen both kids blossom into their
adorable little personalities. Chelsea
left us this last week so she could finish her last semester at Virginia Tech
and will attend nursing school where she plans to become a NICU nurse. You can see that her fitting into our family
was innate. We love her so much and
already miss her more than you know. She
is newly engaged and asked if Wrenn could be one of her flower girls--that will
be so fun for all of us to watch and share in Chelsea’s special day. We have also adopted Chelsea’s fiancé Matthew, who we all adore and hope to get to know much better. We can’t say enough about these two individuals
and are very excited to continue our special relationship in the years to come.

We belong to an organization that has been a true blessing to us
these past two years called Noah’s Children, which is the oldest (going on 16
YEARS), palliative care group in the country. They provide services of support
to families who want/need access to a chaplain, nurses and doctors who come to
the home at any time of the day or night. They provide financial assistance if needed, as well as a social worker and volunteers for a variety of purposes. I
had only worked a little bit with the palliative care group in St. Louis but while
living in Richmond I really felt the full effect of what this type of an
organization does on a daily basis.

Noah’s Children was started by a wonderful pediatrician here
in Richmond and it grew to new heights over the years and now has the full
support of St. Mary’s Hospital. Most
people don’t realize how amazing this type of group can be until they need
it. It's always wonderful to see the great number of people who will turn out for a 5Kto raise money to help find cures, but this organization raises money all year
round to help those parents and siblings who will be left behind. These amazing individuals hold a special
place in my heart for their support and I know one day I’ll be giving back in
some way to ensure that they stay around and continue to grow. Each February
Noah’s Children holds a silent auction gala at the Jefferson Hotel, which we
attended this past year. It was humbling
to see the folks who came out to not only enjoy a great night of dancing and
live music but also to participate in the auction so that these heroes can continue
to help others.

A few months ago I wrote a thank you letter to the donor
family who gave Wrenn the gift of life. It was a letter I had thought about for
three years and had promised myself I’d write within a year of Wrenn receiving
her new lungs. Every time I went to
write the letter I couldn’t put down one word, one sentence, or one thought.
For whatever reason the timing wasn’t right--too close to Christmas, too close
to school starting, too close to when she received lungs--I had more excuses
but the intent never failed. This past
March I sat down at my kitchen table and within one hour had written that thank
you letter and it felt as if every word landed on the page as though I had
written the letter a hundred times. I
guess in many ways you always think of what you would say to a mom who had lost
her child and gave the gift of life to another but how in the world to start
such a letter……

I know if I had lost my child and donated and organ I would
want to hear from the other family. I’m
not sure I’d ever write back but it would give me peace of mind in knowing that
in some way life had gone on. I allowed just one person (a chaplain I had never met in person who had come into
my life by chance and happened to work with a donor organization) to read my
letter before sending it out. I wanted
to make sure my message was clear, thoughtful, and respectful. He assured me that I need not change one word and that I had written a letter that truly came from the
heart. It was a letter I had to write
and I’m hoping it gave some peace to the family that undoubtedly continues to heal from a
terrible loss.

I never lose sight of what’s really important in life--the
fact that we’re all healthy, under the same roof each night and are together. No matter where we might be, it's all that matters. Anything else takes a back seat to those
three ingredients and so when people get bent out of shape that we’re not
coloring within the lines I just smile and say with a shrug, ‘it’ll all work
out and with the angels watching over our family--it always does.’

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.